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It has been four months since I moved my mother into assisted living, and she has made many comments about how she knows that her mind is not working right. She always makes these comments when she’s asking a question about something that she’s already asked the question for multiple times, or when she is trying to remember something.


I have decided that it is time to tell her that she has dementia. Previously I had posted about that and my worry was that it would scare her. But, enough time is gone by now and she has made enough comments about her memory that I think it’s time for us to sit down and talk about it.


I know to be very loving with her, and I know to let her know that we are doing this together, but I am looking for any other advice anyone has who has walked this path before me. Thanks bunches!

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Read the book, Being Mortal.look at the questions. Ask them.
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When Luz, DW, ask "what is wrong with me?" I was honest and told her everything. And we went from there for the next two year until the end.
Best wishes to you.
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NekkidFish Jun 2019
Thank you. ❤️
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NekkidFish, I never told my Dad he was showing signs of dementia. It's tough enough with age related decline without throwing that into the mix.

Any time Dad knew he was confused, I would tell him I have the same thing, it's just part of aging [I am a senior myself]. Told Dad that all the file cabinets in our brain are full, thus it takes longer to find the answers and sometimes things are misfiled. Dad accepted that :)
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Nek, you can’t explain to someone with dementia that they have dementia. It just won’t stick. And it can cause them to be very upset then you have to repeat the explanation an hour later.

i went through this with both parents. Dad was much worse than mom. I always just told him at his age it was ok to forget things. He’s had no short term memory for about 4 years now but still thinks he’s just fine.

dont argue about it. Just go with it. Gently remind her of the appointment etc. Maybe you just forgot. Time to go here now......
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NekkidFish Jun 2019
Thank you! ❤️
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She knows something is not quite right, so she's most likely in the early stages of this disease.
I would ask you to ask yourself WHY do you need to tell her? What purpose will it serve? If she has memory issues will she remember that this is what she has? Will it make things more clear to her, or will she just feel sad about it?
It seems as if maybe this is something you feel guilty about, that you think you are keeping something from her. Maybe, maybe not. There's really no right or wrong answer.
What is the kind thing to do in this situation? Will it make it any better if she knows that it is dementia?
Can you come up with a gentle euphemism? Can you call it memory loss?
It seems that people who have early onset also seem to be very well aware that they have dementia, but somehow with an older person the memory loss slides right in to dementia.
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NekkidFish Jun 2019
Thank you. I do agree with you that may be just calling it memory loss would be a better way to have the discussion. It’s really not that I want to feel better about myself, it’s just that my mom and I have always been very close and open with each other, and I guess I’m feeling that she deserves to know.
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My grandmother was diagnosed dementia/Alzheimer and the last ten years of her life took a toll on us as family seeing this wonderful, compassionate woman change into someone we didn’t know or understand.

Now 20 years later my mothers worst fear has come true, and she too has been diagnosed with dementia. My mother is in denial of any changes in her cognitive abilities and chalks it up to normal aging. This disease robs our love ones the capacity to reason and understand changes they are going through. There is fear associated with what they are going through, and through that comes irrational behavior and anger.

At first I thought honesty was a good approach, my mom is an educated, well read individual. I was wrong. This was not the approach that worked well for us. After discussion with doctors and social workers I’m learning the art of the therapeutic lie.

Unfortunately there is no definitive answer how to handle this discussion with your mother, except allow her to express her concerns, and assure she has a support system with her. I wish best for mom and you.
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NekkidFish Jun 2019
Thank you! My mom sounds like your grandmother.
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Now you know she has dementia. You know what comes along with it. The same questions, same statements, and the forgetfullness of words and memory..

Patience is the key, and diversion. If the questions keep coming at you and you know it's going to come again, tell Mom you love her, and then talk about the weather. Change subject, or try to change subject. Start a conversation about the holiday that is coming up...

Try not to correct her or be abrupt. This could cause her to not want to talk. I am missing my words more often, and my family looks at me like I am crazy. My talking skills are almost embarrassing to me, because I lose my words. Soooo, my family is not compassionate towards me. I think they would rather me not speak, than try to listen to something they are not interested in.

You know what that means, part of your social life is disappearing. This scares me. But I can smile and try to laugh, but they still don't understand.....

Oh well...I can read and type still...
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Isthisrealyreal Jun 2019
I am sorry that your family is not being compassionate and understanding.

But for the grace of God, there goes I.

Tell them it is genetic and they better be nice because they will be in your shoes one day.
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My mother has dementia.......scored a 10 on the MOCHA test meaning she's pretty moderate, bordering severe. She lives in memory care. She constantly whispers very loudly about all the others who have DEMENTIA, and tsk tsk, isn't it a shame? She knows she's confused and can't remember names or words, or what day it is or what happened 10 minutes ago or what she ate for lunch, or IF she ate lunch. But the OTHERS have dementia. She's always felt the need to be "better than", and so she is, in her mind. It's what keeps her going. I don't know what keeps your mother going, but I DO know I'd never, under ANY circumstances use the word dementia with her. What For? Use the word Forgetful or Confused or say she has a Bad Memory, but to use the word dementia just conjures up an ugly, hopeless specter for most people. Which is why it's called Memory Care instead of Dementia Care right? Words DO matter. I may be fat but I don't want to be called fat. I'd prefer heavy or plus sized or some softer, less ugly word, you know? Life is already hard enough for these women without us giving them a reality check. White lies are called for, in my opinion, and become more and more necessary as the hideous disease progresses. It's not about lying...its about compassion.
Best of luck
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Jessica40 Jun 2019
Great reply.
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My dads doctor diagnosed him and told him that he had dementia. His response, he's a effing liar.

If they won't accept it, they won't accept it. There is no convincing or reasoning with their broken brain. Just a heads up that she might reject that diagnosis and get her back up about it.

Maybe just age related memory issues or as we lovingly call it, oldtymers.
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I found it helpful to draw a picture, literally. This is your brain, this is what's supposed to happen, this is what is happening, this is what your doctors and your pacemaker and your medications are trying to do about it. It doesn't have to be a very good picture! - but I think my mother found it reassuring perhaps because she could see for herself that this is a disease, an organic disease, this wasn't her "going bananas." It seemed to lessen the stigma.

We tended to talk about brain function (mother had vascular dementia with ?Alzheimer's involvement). I preferred that because there's so much more to it than memory loss; and again it stressed that we're talking about one particular organ of the body misbehaving itself. She was already used to hearing all about "heart function"; so it made sense that the next set of challenges were to do with brain function.

There are some very good diagrams online, but choose carefully. Some will not be a comfort.

And, remember that it doesn't have to be a single conversation - in fact it won't be a single conversation, because there's too much for anyone to take in even if they are able to concentrate. So you can take your time, see how the information is going down with her, and above all let her decide on the questions.
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Nek, when my mom would ask "what's wrong with me?", I would tell her that she'd had a stroke (she had). It came as a surprise to her everytime.

Perhaps you need a one line, simple explanation (some brain dysfunction; processing difficulties) that will be simple and easily digestible. I like CM's picture idea, too.
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lealonnie1 Jun 2019
Yes, I did the same with mom...........told her she'd had a stroke when she wanted to know why she was being sent off to memory care instead of returning to her regular apartment at the ALF. She DID have a stroke, and it DID contribute greatly to her mental and physical decline, and I felt it was better for her to know that particular truth than to go down the 'dementia' path.
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You Mom has already told you she knows, and she does. Some days will be better for her and some worse. And the next time she brings it up and you are in a good place to talk I would just explain that yes, she does have some dementia, and that there will be better days and worse days, and that it is OK; you will work your way through it, and you will take care of many things for her as she cannot do them. My brother has beginning Lewy's Bodies Dementia and he will sit and talk to me about how differently he sees the world, that he knows what he sees is wrong, but has to work his way "backwards" from what you see normally. He is almost interested if you will in how differently his brain is working. He says he would rather not have known what he has and what it will eventually act like, but given he does know, it is of interest to him. So I would not tell too much. I would just let it be that there will be better days and days that are worse, and she is more forgetful. I am quite convinced, after years of nursing, that anxiety makes it all worse. So let it be just the "new normal" as much as you are able. Tell her if there are things worrying her she can always discuss it with you, that it is OK. There is no shame in getting this. It is hard to face but tell her that she is still herself, that her brain is just working differently than it did. Try to read some Oliver Sacks on the subject of dementia. He is quite fascinating on the subject.
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NekkidFish Jun 2019
Thank you so much!
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I sat down with my step mother, she took it well, shed a few tears, we hugged and that was that. She knew just didn't want to acknowledge this.
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Operative word is dementia.

My Mom has Alzheimers, stepfather has Alzheimers AND dementia. The dementia is worse of the 2.

You Mother isn't going to remember you telling her any thing except aggravate her more. Dementia causes hallucinations. She could lash out physically toward you. My husband and I have seen what dementia does to my stepfather when sundowners starts...not pretty and we had to talk him down to keep him from hurting us or himself. This still happens with him in the AL.

Telling her won't accomplish anything other than more confusion for her. Go along for the ride EVEN when she repeats and repeats and repeats. Just answer in different ways but the same answer, 1 of them will make sense and then things will be fine until the next repeat.

I do this with my stepfather every time I visit them. I try to keep a bit of humor in my answers which makes him laugh when I've finally answered his question in a way he understands.

Our daughter is an RN and had to do a stint in AL for her studies. So, she went home with me a month ago, Mom loved her best out of all her grandchildren, really she did.

My stepfather must have 10 Bibles he reads everyday. Daughter asked him, 'do you read all these books'?

He told her yes to which daughter said, 'you know what? I bet they all have the same exact stories'. Daughter gets her humor from her Mother.

That comment made my stepfather laugh for a few minutes and just kept shaking his head.

You just need to treat her like she's still there as before. You'll find your way and also your Mom in the process.

FYI, there's a resident there who remembers me every time I go for a visit once a month.

Routine: hey Ms F, how ya doing?
Ms F, every one of them and the really good ones twice!

Every single time I walk through those doors. I still laugh at it which makes her laugh. I will sit with her and she tells me about how she needs to go home because her Mother has a boyfriend and she just knows he's spending the night. What will the neighbors think?!

I for one, love to talk with the residents who are still able to remember something whether the truth or just in their head. It brings happiness to them and a visitor too.
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NekkidFish Jul 2019
Thank you so much!!!
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